The Gift of Gratitude-My Hope Sparking Status

Gratitude: The quality of being thankful; readiness to show appreciation for and return kindness. (webster.com)

Gratitude isn’t just the simple task of saying “I’m thankful for…”, though that is a good place to start. It’s being appreciative and showing it.

I came across and article in Real Simple magazine (does that show what my 26-year-old life is like? I now read Real Simple magazine, and I love it) called “Why Gratitude is Great.”  To sum it up very briefly, demonstrating gratitude can make you happier, more energetic, healthier, increase resiliency, improve relationships and turn you into a nice person. Wow. Most important to note for my fellow auto immune disease fighters; having an attitude of gratitude can boost your immune system. There are lots of studies and science out there to prove this, and I haven’t found anything to disprove it. So why not devote myself to this gratitude idea? I haven’t been able to find anything negative about treasuring good things in my life.

I consider myself a pretty appreciative person, but I’ll be honest; sometimes when going through the cycles of having an autoimmune disease, it can be pretty hard to find an ounce of gratitude and pretty easy to slope into the “this just sucks” attitude. I want to stop doing that. I’m not trying to take away from the fact that having an autoimmune disease is awful. It certainly is. But I think one of the great things about this diagnosis is the appreciation and elation you gain from the good days. If I have a day full of energy and I can smile and laugh without pain, am not dizzy or physically exhausted, or on some emotional tyrant that involves sobbing and then throwing shoes, I AM PUMPED. And like many others, I tend to try to do everything I possibly can when I’m feeling fantastic because I’m just so happy to be feeling good. I want to have that attitude more often.

So, starting today, the end of IBD Awareness week, I’m making myself accountable for having this attitude. It doesn’t mean that you won’t catch me saying I don’t feel good. It doesn’t mean my IBD will suddenly disappear. And it doesn’t mean I’m going to able to stop cancelling plans because I’m too tired to leave the house. But it means that when I’m having a bad day, I’m still trying to find something that gives me that elated feeling. A spark of hope, if you will.

I’m calling it my Hope Sparking Status. Every day, I’m going to be practicing being truly thankful, and showing it. I might not be able to post everyday, but I’ll at least be posting once a week with a sum of how I’ve returned kindness into the world for the days prior, or what I’ve done to show gratitude. I’ll be using the blog and other social networks to keep myself accountable (follow me on twitter @flareuphope or instagram @hopefulme2633) so you can follow me there to see how my status evolves. If you have a Hope Sparking Status you want to share, please do! I’ll feature it on the blog.

I think that what you put out into the world can cause a ripple effect. If I can practice being a source of light for others, my own light may grow brighter.  If I can give purpose to having this disease, it makes it more acceptable. And maybe, just maybe, I can make someone else feel better, so they can make someone else feel better, and we can light up the world for those who are surrounded by darkness. It just takes a spark to see in the dark.

So, to launch my attitude of gratitude venture, I’m having a giveaway! It’s just a small package of some of my favorite things to relax with when I need a new perspective. The package includes:

1 box of Bedtime Yogi Tea

12 tealight candles (eucalyptus and spearmint scented)

A microfiber HOPE pillowcase

A tea or coffee or whatever you want mug

A stained glass candle holder

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Want to enter!?! All you have to do is tag someone you want to show appreciation for in the comments below, or on twitter or instagram with the hashtag #flareuphope.

Contest ends on Tuesday December 9th at 8pm ET, so get your entry in now!

Can’t wait to share my gratitude journey with you. Thank you for your support!

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#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

ShowMe1

Hope Warrior-Headbands of Hope

You guys. This charity is awesome. Not only do you get a pretty awesome flower headband for yourself, you get to send a flower headband to a little girl that is battling cancer, and the site donates a dollar for every headband purchased to a child cancer research charity!
I found Headbands of Hope on Instagram @headbandsofhope and was immediately inspired, and the youtube video in their about section talks about how everything starts with a spark! Exactly how I feel about the power of hope. Just a little spark can have so much power.
You can find out a little bit more about the founder on her blog here:

 

Go buy a headband! Or two! http://www.headbandsofhope.com

I bought these:

Flower Crowns

WORLD IBD DAY- Hope in the Beatles

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sun
And I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from  my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sun
And I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

Here comes the sun. It’s all right. 20140531_210240

 

Hope in My Body

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For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel.  My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.

Hope in Miracles

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“Even miracles take a little time.”
The fairy godmother herself.

I started my miracle journey a few days ago and already am noticing all these good things in my life. Ironically it has been one of my most painful weeks with the dear friend ulcie colitis cleaning out her house again and just creating chaos. But, as I begin to consciously choose love over fear and realize what moments are not created by love, life becomes more beautiful.
Sometimes it just takes a fairy godmother to remind you to be a little patient, and even a pumpkin can be a beautiful carriage.